At the beginning of September I had a consultation with a Doctor who specialised in Neurology.  He asked some hazy questions and carried out a very brief examination;  the most technical part of which was running the end of a spatula type instrument down the sole of my foot.  I dutifully touched the end of my nose with my eyes shut and stood on one leg and then the other.  And that is as thorough as his examination was.  “You’re fine.  There’s nothing wrong with you.  The pain in your back is not in my level of expertise.  All I can suggest is you get your head scanned and cervical spine”. The cervical spine is the very bit at the top.

The pain in the relevant bit of my back (L2 and L3) were due to prolapsed discs and an annular tear and not part of that doctor’s specialisation;  which I could understand.  So, I took heart from that, and whilst doing the physio exercises and swallowing Gabapentin (a painkiller) things calmed down for me – mainly thanks to the Gabapentin.  In October I had the MRI’s done of my cervical spine and head and then in December went back to see same specialist who, as we walked through the door to his “surgery” (we met in the corridor outside) said. “Hhmmm.  Things have changed a bit.  You’ve got MS.”  Just like that.

Needless to stay we were stunned into silence and shock.  Not just because of the diagnosis but the bluntness of his words.  It may have helped a little bit if he had said there would be a possibility of seeing an MS nurse.  Or fast tracked a letter to my GP with a bit of explanation as to what could be done next or…..something.  But that was it.  Christmas was just around the corner so the whole system was going to be in shut down until after the New Year festivities.  He wasn’t entirely sure from the evidence he’d seen on the screen, so he suggested a lumbar puncture should be done and that would be another indication towards a correct diagnosis.  His feeling was that it was progressive and not the relapsing or remitting type which, I get the impression, is what younger people tend to start off with and then it morphs into progressive.  I am still unclear as to what the indications are that makes a doctor decide whether an MS patient has R & R MS or Progressive – or indeed if it is MS at all – there are quite a lot of diseases to do with the nervous system out there.

Over the course of the Christmas festivities I grappled with coming to terms with the fact it looked like I had MS.  When I asked the consultant who gave this diagnosis if there was anything I could do to find out more, or give relief, or suchlike he just said “keep off the internet”.  I could sort of understand that as of course the internet can open up a globeful of horror stories.  Perhaps because it was Christmas, any helpline I tried, like the MS Society or MS Trust, was useless with apparently nobody there.  So I was on my own.  So I did precisely what said specialist told me not to do and got onto the internet.   And I think I have the intelligence to be able to filter out the not so helpful content I found there.

At the same time I went to a herbalist who gave me time, talked and listened, and supplied me with countless pills and potions to try and calm the inflammation that was going on with my nerve endings.  I also changed my diet and became one of those people I dreaded arriving on my doorstep with a bunch of allergies.  So I’m now gluten and dairy free.  I have to say that I have never felt any ill effects from either of those ingredients but if it was going to help I’d do anything to calm down the progress of this disease.

At the beginning of January the pains started up again (having subsided between September and December) and so I began the course of Gabapentin which I had stopped in September.  At the same time I came across KMSTC (mentioned earlier) which became a beacon of hope for me over the next few months and upon which I tell you more about in my next post.  The pain problem beginning again, was draining and the pains didn’t disappear with the onslaught of the Gabapentin (which eventually had an effect).  Claudia is a cobra who likes to sink her teeth into my right buttock.  Repeatedly.  Every 30 seconds.  I am happy to say she has shuffled off into her nest somewhere – or wherever cobras live – and she has not visited me for a while.  Instead there is a python who has taken her place who I have not yet christened.  Any suggestions?